This morning we took Caleb to his 3 month med check with his pediatrician. We had to see the pediatrician instead of the health advocate because we had multiple questions the health advocate couldn't answer.
*Caleb has only gained 1 oz in 3 months despite having been working with JanaLee at the Wellness Clinic since December. I was disappointed in this. Last time we worked with JanaLee he made great progress!
*We asked about having Caleb tested for Celiac's Disease since Kris was diagnosed a couple weeks ago. The pediatrician was good with ordering that blood work. I asked if having Celiac's would mess with his growth like we've seen. He said that it would be possible for it to mess with it some, but not a huge amount. It would be more of an absorption issue than a growth issue. After our appointment we went down to the lab and had his blood drawn for the Celiac's disease. They have to send the labs out to SLC for this so it will be a few days before we hear anything. Caleb was NOT impressed with getting his blood drawn. He was quite pissed actually.
*I asked about having him tested for heavy metals. When I had spoken with the chiropractor about everything that was going on, he suggested having him checked for heavy metals. I'm a bit skeptic on this because I don't think he's been exposed to anything. The pediatrician didn't feel like that was going to be worth while to run that test, so no heavy metals testing.
*I asked about a referral to an endocrinologist. I told him what JanaLee had said about his pituitary and endocrin system showing up as being low. I told him how we had done NAET testing prior and he had no idea what I was talking about. I explained it the best that I could but I'm hoping he goes home and does some research to educate himself so he knows what I was talking about. Not going to hold my breath though, I know he's a busy guy. He was reluctant in agreeing to refer us to an endocrinologist. Dr. Clarke was an endocrinologist and he never mentioned a concern with that for Caleb. Dr. Sandgren said that typically the endocrinologists won't do much until you have height going up and weight going down. Although Caleb is growing at an exceptionally SLOW rate, he's still growing, he isn't losing weight (today we learned he weighs 44 lbs and B weighs 51). He said he would put in a referral for us, but I could tell he was reluctant to do so. He had mentioned one in Ogden but I asked about PCMC. I figure if there's anything major going on that's where we'll be sent anyway seeing as how they are the ones who specialize in children - no sense in seeing two different endocrinologists. I agreed to wait a few more months before pursing the endocrinologist.
*Dr. Sandgren feels that seeing the nutritionist would be beneficial, even though we saw one before and it was a joke to say the least. He feels that she may be able to dig a bit deeper and give us a some helpful advice seeing how Caleb is an INCREDIBLY picky eater on top of these other issues. We go see her March 29th.
*Dr. Sandgren asked if we've noticed Caleb's appetite being suppressed. I told him that he actually has a better appetite when he's working with JanaLee. He still eats limited foods (SO picky), but he eats more of those foods when he's working with her than when he's not. We kept his Metadate the same dosage but are keeping an eye on the appetite to see if it diminishes, as that would be a problem with his size.
After Brookelyn got out of school it was her turn to go see the ENT. We were in and saw Lindsey on January 30th,. At that appointment she had the entire tip of a Q tip pulled out of her left ear. We were told to do drops for 10 days and come back about March. We've done drops for most of February. She's still complaining that her ear is bothering her. She doesn't say that it hurts, it's just "bugging" her all the time.
*We saw Lindsey again today. The audiologist tested B's hearing before Lindsey came in. He told me that her right ear drum wasn't moving (fluid in it) and that the tube in the left ear was blocked (it's going on 3.5 yrs old so I'm not surprised).
*Lindsey said that her right ear drum has fluid in it - more than when she was there a month ago. She said it doesn't look awful, but it looks worse than it did a month ago. It's very retracted (think vacuum tube vs plastic wrap). The tube in her left ear is indeed permanently blocked. It's highly likely the ear drum behind the tube has healed and the tube is basically just sitting there not able to come out.
*We were give a couple different options. First option was that we could do 5 days of a high dose steroid and a nasal spray. We could do this for a week or a month and see if it helps. This makes me leery as she's been croupy and when she does the nebulizer that's already a steroid, so adding another steroid will compromise her immune system and she will be more susceptible to infections. Another option is to go in and take out the tube that's there and put another set of tubes in. Travis was not a fan of this idea. I asked about something we discussed when this last set of tubes was put in. There was talk of possibly going in and removing part of the bone that connects to her jaw bone in an effort to widen her ear canal to help prevent her from getting more ear infections. At this time, her ear canals look really good and she hasn't been getting ear infections, so that option is off the table.
*After quite a bit of discussion, we decided that we would put her under and put another set of tubes in. I asked if they would be putting in two in each ear again as this is what she's had done every time but the first. Dr. Blotter said that's a great question and honestly he isn't sure. That's something he's going to have to ponder on and won't really know until he gets in there. He said that it depends on her ear drums and how they react to the incision. The ear drum that's retracted may be just fine to put two tubes in after it equalizes the pressure and it may increase the size of the incision so that he can't put two tubes in there. We also discussed the possibility that her ears are full of pus pockets (lovely, I know). He said if there's a bunch of infection in there then yes, he will put two tubes in each ear if possible. We also discussed what kind of tubes he should put in. They make a variety of different kinds and to be honest, B has tried them all. She does best with the titanium (that's what's still in there after 3 years). However, depending on what happens after the incision is made, will determine which kind of tube he can use. The shape of the titanium tube is like a spoon. The T tube is longer and more narrow. If the ear drum will allow it, he will use the titanium tubes since that's what she's done best with, if not, he will go with the T tube and hope that at her two week follow up her body hasn't rejected them and kicked them out.
*So, B has ear surgery set up for March 16th. There won't be a fat graft at this time (that's what we discussed a month ago when we talked about taking the last functioning tube out). This will be her 7th (and possibly 8th) round of tubes. They did say that since she isn't equalizing the pressure in her ears, it's essentially feeling like her ears need to pop all the time. No wonder she's always complaining about her ears bugging her! They would be bugging me too!
*Sam goes to physical therapy on Wednesday for a re evaluation on her knee. I'm a bit concerned about how that's all going to turn out. She's essentially quit wearing her brace because it hurts as much with the brace as it does without now and the brace is starting to hurt the back of her knee. Based on how she's been filling out the paperwork the last time or two at physical therapy, I'd say the pain has increased. I find this odd because she's been saying the iontopheresis helps her knee feel better. My gut is telling me we will be going for an MRI after we see the orthopedist on Friday. I'm crossing my fingers that she hasn't got any damage to her meniscus. I'm not sure how she would handle sitting out an entire dance season. It's possible she wouldn't survive or she would drive me to the brink of insanity.
All I can say is that things are suppose to come in three's, right? I've got three kids and four-five issues (Caleb & weight, B with her eyes and ears & Sam with the patella & meniscus). I'm just glad we have insurance again and apparently it will be a "Meet the deductible quick" kinda year.
